 So, I wanted to update you on the, what's been going on with the genomics and society working group. If people recall, we started this working group because there was a change in the organization of NHGRI, which led to moving around where the LC research program was. So the LC research program initially was in the division of extramural research, and when the reorganization was undertaken, there was a new division created, and the LC research program is now in the division of genomics and society. So the changes that have gone on are sort of around the LC program. The LC program, as a research program, remains intact as an independent research program. The challenge was more how to change the way the institute was dealing more broadly with issues associated with genomics and society. So just to show you the differences between the two organizations, LC is, as you can see here, still primarily, it is a research program that focuses on the ethical, legal, and social implications of genetic and genomic research, and in so doing, they fund and encourage, manage research grants and also hold conferences about these issues and create research consortia and policy conferences to deal with them, and the budget is set aside from the NHGRI budget. The genomics and society group has LC in it, but then adds or, say, emphasizes more clearly certain elements, and one would be, importantly, to bring these issues and integrate them broadly across NHGRI, so stimulate and enhance genomics, and another is to deal with collaborations with the Division of Communication Policy and Education to make sure or to facilitate better the link between LC research and possible policy applications and also the need for certain policy and perhaps getting a response from the LC research community to help inform that policy. The budget remains the same, however, so let's see here. Part of what's going on here, of course, is there's a, there was a bureaucratic motivation to do this in the sense of as part of the restructuring of the management and the organization internally to NHGRI, but also importantly, it also is a recognition of how many new problems and new events, things that have happened. Red Arrow refers to the point at which the genome is mapped, and so if you look to the left side, yes, there were issues that LC was dealing with, primarily in the beginning, very much focused on issues that came out of research. And as we move over to the right, there's much more going on. It's genomics, the genome's been mapped. We have many more issues going on, and a lot of these things are dealt, need to be dealt with in terms of broader patient population as things move into clinics and other new populations like the newborn or the non-invasive prenatal diagnosis, things like that. So there's new populations that are beginning to be affected. So as genomics is starting to really percolate through the healthcare system, the issues are growing and are changing in nature, and that's part of the reason to have this new division. This is just something that's out of a draft paper that I have that's not out yet, but I just thought it would be interesting here to look at. So this is based on an analysis through Medline of using the mesh terms related to LC, not LC itself as a mesh term. And if you go back to 1986 to 1990, so before the genome, there were about 1,600 articles that might have fallen into those categories. And in the most recent set, 2006 to 2010, there's over 10,000. So that's just a way to express. It's a way to represent what we all know is happening anyway. I think that that is just interesting. And it's about a seven-fold increase and more or less the same with, if you run the line of genetic research, it parallels it very clearly. So that was just an interesting way to see what's been happening. So the idea then of creating the division and putting LC inside the division was to address this issue of being able to broaden and expand the way that NHGRI is dealing with these issues. And the idea is that the division of genomics and society addresses problems that exist across the whole range of kinds of research and moving into clinics and kinds of projects that NHGRI takes on. This is from the strategic plan, the bench-to-bedside graphic that we have. This is a slide that I was debating about putting it in or not. It was the first draft of a slide. I didn't do the second draft, and I actually kind of liked it right here. It's very static. And what I was going to try to do was move on and sort of show how these changes would actually be made, make it more dynamic, more synthetic, more holistic. But I actually sort of thought this might be a better way to stop, to just have it only go this far at this point. Because this is where we are. These are the connections that have to be made. This is a challenge. This is static at this point. I mean, yes, there are already existing enormous amount of work that goes on. LC research programs, staff do not just work only on research. They do a lot of work. They have a lot of alliances already with these groups. But I thought that this would be sort of just a historical point to come back to in a year and see if the next diagram has a more synergistic or holistic appearance to it. So the question is, how do we get from what this looks like to an ideal of something more integrated? So that was part of the reason that the genetics and society working group was established. So the idea was that it would provide input about the LC research program and also talk very specifically, and I'll talk a little bit more about that in a second, about how to think about the balance of LC research initiatives, how they should be put together, investigator initiated versus program initiated, and the best use of limited budgetary and staff resources. I mean, that's an important theme that runs across this, and that is that all of these changes at this point are taking place absent. We have an acting director in Mark Geyer for the genomics and society division, but we don't have a permanent director. And the idea is that these changes are at this point taking place without budgetary changes. So there's a lot of sort of conceptual work that needs to be made in terms of thinking about priorities. So also, too, that the working group should be able to help advise about things coming down, coming down the pike, what might be going on, policy landscape, genomic medicine, and then this was, this is one of the important things to identify ways that the new division can work more effectively across NHGRI with the other research and policy components, and then also to think about synergy or collaboration between NHGRI and other institutes and also going out to national and international. So this is, oh, one more, sorry, identifies issues that are more appropriately, this is an important one, more appropriately addressed by other NIH institutes or other agencies and organizations. And this has been one of the problems, because as genetic and genomic research has expanded and has more and more institutes and more and more people are interested in taking this on and using it as a way to understand their particular field, they also encounter more of the LC related issues, but they have not, the other institutes have not themselves established an office to deal with LC issues, so that while it's welcome and very encouraging that all of the other institutes have embraced this sort of research, it is a burden on the LC research staff to be the primary, if not sole, repository of expertise on these issues vis-a-vis all of NIH. So we put together a working group and got some excellent people to serve. This is a working group of council, and so there needs to be at least one member of council on it, and there are three right now, including myself and Amy and David Williams. David and I are rotating off fairly soon, so Amy will be the representative. And this has been a great group to work with so far, we've had some phone calls and we've had some meetings. The first meeting was in April, and what we did more than one might expect for a group was really try to concentrate on explaining to them very basic facts about the organization of NHGRI and the relationship between LC and NHGRI and what the reorganization did. So because part of what they will need to do initially has to do with sorting out how to move the division forward, and that requires understanding the division, the place of the division within the institute. So we had talks by Mark Eyre and Eric Green and Jim McEwen and Joy Boyer about NHGRI reorganization, the goals and mandates of the division, and the history and organization of challenges of the LC program and of LC budget and finance. So we spent the first day going over a lot of very basic things, and I don't think that anybody in the group, other than those of us who are now on council, I don't think there's anybody in the group who had been on council ever. I mean, some people have been on study sections, some people still are, but there was a need to have a lot of these conversations. People were not really aware of a lot of the details. So on the second day, we had two discussions to move this along, and the first one was about talking about program priorities, research program priorities, and this is important for several reasons, but partially because the way that priorities have been said in the past has been primarily through the strategic planning process, and there's a sense that it doesn't necessarily address the details of the LC mandate as closely as it should. And so there was a lot of talk about how to figure out a better, more effective means for creating LC research program priorities, and then we also talked about how to talk about the evolving field of LC, how to improve the program balance between research-related and service-oriented activities. This is at the crux of a lot of the challenge of moving from just the LC program to officially putting it inside of a division, where the division officially has the responsibilities for working with people who are working on policy and things like that, that are really not research activities, and so how do we handle that challenge in a way that's appropriate and that maintains the excellence of the research program. And so one idea that the working group was proposing was to figure out how some of the duties that have been taken on by the LC staff can be transferred out, and whether or not there's a way to grow those skills more broadly, for instance, within NHGRI, some of the skills that they bring to the conversation. On the second day, we talked about how to integrate LC research into genomic research and policy, and this is a part of the whole story because, again, as there is more and more research being done on genomics, the question is what's the best way for LC to track that, to parallel that, so you can have an embedded program where there are members of the research team who are LC identified, you can have a parallel program where they are funded through parallel RFAs, you can leave it to the R01 mechanism, so there are a lot of different ways. And so whether there should be embedded, independent, service-oriented, scholarly, different modes of integrating LC research into genomics. And then what we next started to talk about was how to assess the value of an embedded LC component because there's been some success with this recently, and so is this a good mechanism to use? And so we started to talk about, well, how would you know whether it's a good thing? And so we started to try to talk about should we try to create a list of standardized questions that could be applied for all new programs that would help the LC group assess what would be the best way for LC to become integrated into various research programs. So we haven't actually come up with a list yet, but the proposal is that we can. I mean, it would be based on the middle section. Maybe Karen, is Karen here? Yes, okay, so maybe Karen can speak to this a little bit more. This was the session that she chaired, but these were some of the ideas that we came up with about how you could go about trying to ask those questions and make those decisions. So that was the second day, and we will move forward. We're having phone calls in between, but the next time we can figure out a time to meet is in November. The working group members themselves will start to do presentations. So the first time around, we really had the staff of LC and the staff of NHGRI in the role of educating the members of the working group. And now the working group people themselves are going to pair up and come up with their different assignments of the issues that we talked about in those two discussions. And we're going to focus in on at least two areas and start to decide how the working group can best address them, whether it will be through a set of recommendations, through a report. We haven't exactly decided the mechanism. So what we're focusing on now is the relationship between LC and the division and on LC and how to improve or how to have the priority setting process be as effective as possible within LC. And then the goal eventually is to move on and to have a much more broad, a broader sort of take on initiatives about how LC should be addressed. But this is where we're starting. And then the other things that we'll do at that meeting is that we'll get a report on the LC training efforts, which is important because the SEAR program is the first groups, first people who got their SEAR, first institutions to get their SEARs will be moving out of that. It's just five years and five years and out. And so they've been very effective as training mechanisms. So what, I mean, yes, there are other ones being funded, but what to do with those universities that have created some really excellent training programs. Update on the division director's search and we'll also have presentations from the intramural program, from the communications and education and policy, and from the bioethics core intramural program. That's a typo. So the issue being, again, more of an educational piece so that the working group members can have a sense of what the infrastructure is and what these other offices are. So I think this has gone very well so far. And I want to thank the LC and NHGRI leadership and staff who have helped us out and been very, very generous with their time and their resources and any questions? Okay. Thank you, Pamela. Questions, comments, discussion. Amy, do you want to, as a member of the working group, do you want to add anything or? I think that was very helpful. It's a great group of people. I think my understanding is that the goal is for this to be kind of a long-standing group that we don't always get into the weeds of the LC program in this council meeting because it's such a small portion of the portfolio. So the idea is to kind of serve as an advisory council to the staff for that program. So I think it's, so far the first meeting, Pamela did a great job and it was very helpful, I think, for all the members. Just a quick question by matter of interest. You noted on one of the days there was a discussion of the evolving interest points of LC and I just wondered are there hot buttons that you came up with that you'd like to share? What the conversation was about more was how to standardize or how to make the process of doing that and how to integrate that so that that's an ongoing capacity. But maybe Amy or Karen or anybody else has, no. I would just also say that I think the group very much was in agreement that we would welcome sort of questions or direction from this group in terms of our activities because I think, you know, there's a lot of issues that come up in terms of sort of there's this 5% set aside and it's kind of its own autonomous independent thing but we're starting to see LC get integrated more into some of these other programs outside of that set aside budget and thinking about how much to do that and where to do that and when it's appropriate. So I think as we get ready to meet in November past this meeting people have suggestions of things that they would like for us to tackle. I think I don't mean to speak for you. No, no, no. I think the group is very open to getting feedback. I mean I should also add up maybe a few things. I mean keep in mind I've been very open about this, creating this new division from the very beginning and that this is sort of, you know, wet clay. Even some of the things that you see from Pamela's presentation or hear me talk about before there are some ideas about how this new division can be something even beyond just the LC research program classically defined and clearly I'm trying to set up an opportunity so that when the first permanent directors identified part of the attraction I would think of being that individual would be to be able to create something and take this division in a direction beyond what it has done traditionally in the LC research program. Either within the LC research or things around it or other things that would fall under the general umbrella of genomics and society. So part of my reason for wanting to get this working group up and going and functional interactive and thinking about stuff is so that when a new director is there, the first director has identified that individual now has a good group to immediately interact with and to bring, I'm fully convinced that once a director is in place there will be things this working group will be doing that we can't anticipate right now.